* When families and their doctors work together to make comprehensive care in the community a reality, this partnership is called a Medical Home. Learn about Medical Home activities and other resources in Maryland: Maryland Department of Health and Mental Hygiene Office for Genetics and Children with Special Health Care Needs 201 West Preston Street Baltimore, MD 21201 phone: 800-638-8864 website: www.fha.state.md.us/genetics Join physician leaders working to improve care for children with special health care needs: Maryland Chapter American Academy of Pediatrics Children with Special Health Care Needs Committee 744 Dulaney Valley Road, Suite 12 Towson, MD 21204 phone: 410-828-9526 website: www.mdaap.org Find family leaders working to promote Parent-Professional Partnerships: The Parents’ Place of Maryland (Maryland Family Voices) 801 Cromwell Park Drive, Suite 103 Glen Burnie, MD 21061 phone: 800-394-5694 email: [email protected]website: www.ppmd.org Find Tools for Medical Home Improvement: American Academy of Pediatrics National Center of Medical Home Initiatives for Children with Special Needs 141 Northwest Point Blvd Elk Grove Village, IL 60007 phone: 847-434-4000 email: [email protected]website: www.medicalhomeinfo.org Center for Medical Home Improvement Crotched Mountain One Verney Drive Greenfield, NH 03047 phone: 603-547-3311 ext. 272 website: www.medicalhomeimprovement.org Find resources to support Family-Centered Care: Institute for Family-Centered Care 7900 Wisconsin Avenue, Suite 405 Bethesda, MD 20814 Phone: 301-652-0281 email: [email protected]website: www.familycenteredcare.org The American Academy of Pediatrics, the American Academy of Family Physicians and the national Maternal & Child Health Bureau are promoting Medical Home partnerships between families caring for children with special health care needs and the physicians they trust. In a Medical Home, families and physicians work together to identify and access all the medical and non-medical services needed to help children with special health care needs and their families reach their greatest potential. A Medical Home partnership enhances the effectiveness of the patient-family-doctor relationship, not by working harder and faster but by doing things differently. ■ Medical Home is not a building, house or hospital. It is a way of providing high quality health care services in a cost-effective manner. ■ Medical Home is as much an attitude as it is a way of providing care: families are viewed as the main caregivers and the center of strength and support for children. ■ Medical Home is another way of describing a physician’s office when it helps families access the full range of services and supports needed to care for a child with special needs. WHAT IS A MEDICAL HOME PARTNERSHIP? RESOURCES FOR BUILDING MEDICAL HOME PARTNERSHIPS IN MARYLAND WHY Invest in Building a Medical Home Partnership? ■ The number of children and youth with special health care needs is growing, and families’ expectations about the delivery of health care are changing. Continuing to provide quality health care services to these children and their families requires new approaches to care and new systems of supports. ■ The formation of active and lasting partnerships with families can improve the experience of providing health care for physicians and their staff. ■ Breakdown in communications and connections between patients and their physicians is among the primary reasons why consumers change providers, and in severe cases, take legal action. ■ Purchasers are increasingly using patient satisfaction measures as an indicator of quality care. SMALL STEPS… BIG DIFFERENCES BUILDING MEDICAL HOME PARTNERSHIP S* FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS 101 Tremont Street Suite 812 Boston, MA 02108 www.neserve.org Developed with support from the American Academy of Pediatrics and the Champions for Progress Center Department of Health and Mental Hygiene Office for Genetics and Children with Special Health Care Needs Martin O’Malley, Governor Anthony G. Brown, Lt. Governor John M. Colmers, Secretary
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* When families and theirdoctors work together tomake comprehensive carein the community a reality,this partnership is called aMedical Home.
Learn about Medical Home activities andother resources in Maryland:
Maryland Department of Health and MentalHygiene
Office for Genetics and Children with Special Health Care Needs
201 West Preston StreetBaltimore, MD 21201phone: 800-638-8864website: www.fha.state.md.us/genetics
Join physician leaders working to improve care for children with specialhealth care needs:
Maryland Chapter American Academy of Pediatrics
Children with Special Health Care NeedsCommittee
744 Dulaney Valley Road, Suite 12Towson, MD 21204phone: 410-828-9526website: www.mdaap.org
Find family leaders working to promoteParent-Professional Partnerships:
The Parents’ Place of Maryland (Maryland Family Voices)
801 Cromwell Park Drive, Suite 103Glen Burnie, MD 21061phone: 800-394-5694email: [email protected]: www.ppmd.org
Find Tools for Medical Home Improvement:
American Academy of Pediatrics
National Center of Medical Home Initiativesfor Children with Special Needs
141 Northwest Point BlvdElk Grove Village, IL 60007phone: 847-434-4000email: [email protected]: www.medicalhomeinfo.org
The American Academy of Pediatrics, the AmericanAcademy of Family Physicians and the national Maternal & Child Health Bureau are promoting Medical Homepartnerships between families caring for children withspecial health care needs and the physicians they trust. In a Medical Home, families and physicians work togetherto identify and access all the medical and non-medicalservices needed to help children with special health careneeds and their families reach their greatest potential.
A Medical Home partnership enhances the effectivenessof the patient-family-doctor relationship, not by workingharder and faster but by doing things differently.
■ Medical Home is not a building, house or hospital. It is a way of
providing high quality health care services in a cost-effective
manner.
■ Medical Home is as much an attitude as it is a way of providing
care: families are viewed as the main caregivers and the center of
strength and support for children.
■ Medical Home is another way of describing a physician’s office
when it helps families access the full range of services and
supports needed to care for a child with special needs.
WHAT IS A MEDICALHOME PARTNERSHIP?
RESOURCES FOR BUILDINGMEDICAL HOME PARTNERSHIPSIN MARYLAND
WHY Invest in Building a Medical Home Partnership?■ The number of children and youth with special health care needs is
growing, and families’ expectations about the delivery of health care are changing. Continuing to provide quality health care services to these children and their families requires new approaches to care andnew systems of supports.
■ The formation of active and lasting partnerships with families canimprove the experience of providing health care for physicians and their staff.
■ Breakdown in communications and connections between patients andtheir physicians is among the primary reasons why consumers changeproviders, and in severe cases, take legal action.
■ Purchasers are increasingly using patient satisfaction measures as anindicator of quality care.
SMALL STEPS…BIG DIFFERENCES
BUILDING MEDICAL HOME PARTNERSHIPS*FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS
101 Tremont StreetSuite 812Boston, MA 02108
www.neserve.org
Developed with support from the American Academy of Pediatrics and the Champions for Progress Center
TIPS FOR PROVIDERS
Department of Health and Mental Hygiene
Office for Genetics andChildren with Special Health Care Needs
Martin O’Malley, GovernorAnthony G. Brown, Lt. Governor
John M. Colmers, Secretary
ONE STEP at a TIME…These practical tips for physicians, nurses and
office staff can help to improve both family
and provider satisfaction. Use them to review
current office policies and for training staff.
Start where you can; there is no special order
for implementation. Build your Medical Home
partnership one step at a time.
Step 1: BEFORE THE VISIT – Anticipate Special Needs
Appointment Scheduling & Medical Record
Identify patients with special health care needs in thescheduling system.
Use a special sticker or different-colored chart.
Include critical needs at front of medical record such as:allergies, larger exam room, best way to take height andweight, scheduling when extended visits are possible.
Reception & Waiting Area
Greet by name families and patients who call or come tothe office frequently, to increase confidence that theirneeds are recognized.
Ask the family to fill out a brief “Concern of the Day”form to identify new issues or pressing needs.
Use the waiting room to share information aboutprograms and resources useful to families (e.g., specialsummer camps, support groups).
Be mindful of challenges faced in the waiting room dueto equipment or infection concerns. Offer alternatespace when waiting time may be extended.
Step 2: IN THE EXAM ROOM – Use Family as Experts
Adjust Routine Procedures
Ask for advice before starting any procedure, “Is thereanything I should know about your child or what worksbest for him/her at the office?”
Delay more routine aspects of the exam when there isan urgent need until after the physician has attended tothe immediate concern.
In cases where a child is examined frequently, thephysician may decide it is not necessary to weigh orundress the child at each visit. This can spare the parentand child difficulty or discomfort.
Assess Unmet Needs
Review the “Concern of the Day” form to facilitateconversation.
Ask questions about the impact of the child’s conditionon the family — on siblings, work, finances, fatigue —and assess the support systems in place.
Encourage the family to discuss other facets of theirchild’s life including in-home care, education, recreationand socialization.
Offer to help explain their child’s medical needs to otherhealth, education or community professionals, if needed.
Use Written Plans for Care
Acknowledge the family’s need to communicate medicalplans and decisions to other providers outside the office.
Set short-term (3-6 month) and long-term (12 month)goals with the family, always including non-medicalgoals.
Provide information on recommended medicaltreatments in writing.
Develop a written plan of care with the family andupdate the plan when regularly assessing progress.
Step 3: AFTER THE VISIT – Help Coordinate Care
Help Find Resources
Identify a staff member or community-based carecoordinator to help families find needed services andimplement care plans.
Connect families to community resources, such asspecialized transportation, durable medical equipment,home care, or respite.
Maintain contact information for public and privateagencies that can provide information and referrals,including the Office for Genetics and Children withSpecial Health Care Needs and your local healthdepartment.
Maintain Linkages with Specialists
Ensure continuity of care and updated information byworking to improve timely communication with medicalspecialists.
Help families make sense of clinical recommendationsthey may receive from different providers.
Organize or participate in team meetings with multipleproviders to achieve agreement on plans for care.
Paying the Bills
Assign a staff member to help with referrals, paymentissues and follow-up activities to assist families tocoordinate financial benefits and increase timelyreimbursement.
Keep a list of how to reach the special casemanagement programs within health plans and insurersthat serve your area.
Refer families to public programs such as the MarylandMedical Assistance Programs (including MarylandMedicaid and MCHP) and the Children’s MedicalServices Program, as well as local organizations that may offer financial assistance for medical needs.
Step 4: IN THE COMMUNITY – Work Collaboratively with Families
Family & Staff Participation
Seek the input of families in your practice to find ways tomake the office more user-friendly and family-centered.
Identify potential parent leaders who may be interestedin supporting other families.
Invite staff members with interest and skills in workingwith families to help build the Medical Home partnershipin your practice.
Parent-to-Parent Support
Learn about parent support groups in your communityand encourage families to connect with those groups.
Post notices about meetings and events in your waitingroom.
Offer your office facility for evening meetings.
Families as Advisors
Include parents on existing practice-based committeesthat inform office policies and practices.
Benefit from the expertise of parents in your practice by creating a Family Advisory Committee.
Seek consultation from family leadership groups like The Parents’ Place of Maryland when questions ariseregarding family-centered care.
■ have a chronic physical, developmental, behavioral or emotional condition expected to last 12 months ormore, and
■ need health and related services more than most children,■ may receive these services from various public and private agencies and providers in the areas of health,
education, and social services, ■ and, as a result of complex conditions and many different providers, may need help in coordinating this care.
All physicians who care for children will have patients and families with special health care needs intheir practice. Children and youth with special health care needs are recognized to be those from birthto 21 years old who:
WHO ARE CHILDRENWITH SPECIAL HEALTH
CARE NEEDS?
This includes children and youth with chronic medical conditions such as diabetes, sickle
cell anemia, cystic fibrosis, and heart disease; developmental disabilities such as mental
retardation, sensory impairments, and autism spectrum disorders; emotional or behavioral
conditions such as depression or ADHD; and physical disabilities such as cerebral palsy,
spina bifida, and muscular dystrophy. Recent survey data from the National Center for
Health Statistics, Centers for Disease Control and Prevention estimate that over 15% of
Maryland children have special health care needs that meet this definition.
